In December my sister had surgery to remove a mouth cancer and ended up losing her upper left jaw, cheek and eye. Partly due to a slight hiccup in her mouth, the reconstruction work won't start till next month (July). She'll start with the jaw and roof of mouth being fixed and then I believe things can progress with her facial prosthetic. She's had a couple of meetings with the prosthetic 'maker' and is very excited about what can be done.
I'm here to try and get some insight how I can better support her emotionally. She has a loving husband and grown up children so is certainly not alone but I know she finds things very hard - emotionally and physically. I want to be able to help her but am not really sure whether her fear and/or anger is about her disfigurement or the cancer or both or?? I would be most grateful for some insight into what she might be feeling and how I might in some way be able to help her deal with all this. She is very stong and has a fantstic attitude but I think it is getting harder to maintain that. She said that her close friends don't call as much as they used to and I think partly that's because they think she's strong. I'm hoping she will have the courage to let them know she needs them more than ever. She's also said that she's going to get some counselling now which is great. PS. She has received the 'all clear' from her surgeon post-op, but I suspect there will be many more visits to him yet? Thanks all.

Ms Stanmore

If I had to "guess" i think it is probablly a combination of the 2..this disease is so hard for so many reasons and the fact that it can be sooooo disfiguring as well as life threatening..that is alot. it is nice to hear she is a strong person , but even the strongest of us have weak moments and need people to lean on. Attitude is key at least that is what they say. Counseling is a plus at least for me it is because it allows me to know that i am not crazy and far from it...lets me know my fears and concerns are very normal .. I learn that on here as well. Maybe you could let her know about this site and she can talk to others who have been through similar things ! hang it there ,,you wll get through it .One day at a time that is how, Love your sister and let her know you are there. Sounds to me as though you are a GREAT sister and she is lucky to have you !
Shar

I agree with Sharlee. I owe alot of my emotional support to this forum. Just being in a community of people who have been through the same things and face the same things is a help in itself. There is a wonderful respect for one anothers knowledge. Sometimes it makes it easier to trust those who have went before us. Tell her about the sight. She will visit us when she is ready. I understand the friends not calling. Well just one but he is my best friend. I think it is natural. We get treatment and the big scare goes away, so people get on with their lives. Try to practice patience with others. I will probably call my friend and just ask him. Good luck to you and your sister. Hang in there. Perseverance wouldn't be such a respectable principle if it came easy.

Ms Stanmore

Read this post.Here is Dr. Email address

[email protected]

Dai Phan DDS, MS
Member
Member # 4114 posted 03-20-2007 12:14 PM In "Introduce Yourself"

Hello all,

My name is Dai Phan and I am a maxillofacial prosthodontist ( a dentist specialises in prosthetic reconstruction). I have given numerous CE courses to dentists on numerous dental topics. If you have any questions about dentistry as well as oral cancer related topics, I will be happy to offer my opinion. Please note that my opinion is not a substitute for seeking care with your practitioners as nothing can be diagnosed over the Net. To introduce myself to a more personal level, please see this link below. Thank you and have an enjoyable day! DP

http://abqtrib.com/news/2007/feb/15/erik-siemers-doctor-enjoys-healthy-doses-laughter/

Yes, do write to Dr. Phan...He is most generous. I don't know if his work includes facial prostheses or not, but he does do prosthetic work for inside the mouth.

I also lost my upper jaw...on the right side....along with part of my hard palate on that side. I did not have involvement as high as my eye, so I can't relate to how they treat that.

I have done some reading, however. I presume that she has some sort of obturator now? Will she undergo the reconstructive surgery that involves the grafting of a piece of the fibula into the mouth, along with a tissue graft, also from the leg? I am considering this surgery myself, though I am having trouble getting "up" for another big surgery.

If I can be helpful, feel free to answer here or send me an email.

If they do the bone graft, they can install implants into it, after healing, and attatch a dental and / or facial prosthesis to those.

I will add that I had a profound feeling of loss that caused me to literally grieve for my loss...the loss of part of my mouth, and some of my other functions that I had thought I had lost but which have now normalized, for the most part. But the grieving is real, and it has nothing to do with a positive attitude. The attitude will help the grieving to go faster, but you can't rush the process by choice.